Hypoplastic Left Heart Syndrome: Alfie’s Story

Alfie’s heart condition, hypoplastic left heart syndrome (HLHS) was diagnosed at Sarah’s 20-week scan. Here she shares their story:

On the 16th April 2020, it was time for my 20 week scan. I had always been nervous about my scans, because I wanted this baby so much, I was always terrified of something going wrong.

I knew the 20 week scan was about more than just finding out the gender of our baby. It was about looking at the scan in more detail to ensure that everything was as it should be. I walked into the room, still feeling very nervous.

I lay and waited for the sonographer to begin the scan.

“Oh there is baby, and I can see a heart beat!” Phew! Finally I could relax and enjoy the rest of my scan. The sonographer seemed to be quiet and was taking quite some time. She asked me numerous times to turn onto one side, then onto the other.

I began to feel extremely anxious.

I had no hand to hold, as I had to attend this appointment alone due to COVID19. Little did I know I’d need my husband more than ever.

“I have some bad news.” The words I had dreaded. The words no mum-to-be ever wants to hear.

“I can’t see all of baby’s heart”.

I lay there in shock and thought, how can you see the heartbeat but not all of the heart? I just couldn’t make sense of it in my head.

I wiped the gel away from my tummy and sat down on a chair while the sonographer went to speak with someone about my scan. I just stared at the beautiful scan picture I had been given. Tears filled up in my eyes. “What have I done wrong?! It’s all my fault. I can’t even produce a healthy baby,” were all the things I was saying to myself.

I left the antenatal unit, with an appointment to see a specialist heart doctor the next week. I was shown out the back way so I didn’t walk past other expectant mums with red puffy eyes from crying..

How do I tell my husband? I was now flushed with the feeling of sickness. I knew I needed to drive home and tell my husband that all was not right with our baby’s heart..

The next week came around very slowly. I was furloughed from work due to the pandemic, so every single day until that appointment I was constantly thinking about the little boy in my tummy, just wanting answers.

On Wednesday 22nd April, we arrived at Bolton Maternity Unit for our appointment. Due to the nature of the appointment, my Husband was allowed to attend with me. And, of course, we had reactions from other expectant mums about how I shouldn’t have him with me – but the security on the door just told us to carry on..

The specialist sonographer called us into his room and began the scan. I just felt cold. I could feel the tears already rolling down my cheeks as I hoped the sonographer from last week had got it wrong. But, we were given the news that it looked like our little boy had a heart condition called Hypoplastic Left Heart Syndrome (HLHS).

My mind went blank. What did this mean? Was I going to lose our baby?

From this our care was then transferred to St Mary’s Fetal Medicine Unit in Manchester – there we saw a paediatric cardiologist who confirmed that the doctor from Bolton was correct. Our little boy only had half a heart.

We were given three options – two of which were jut utterly heart-breaking to even think about. We could end the pregnancy at the stage we were at, have our little boy on comfort care (where nothing would be done and he would eventually slip away) or we could continue with the pregnancy and he could have three open heart surgeries at Alder Hey in Liverpool. This would prolong his life, but not fix his heart.

Straight away we knew we were going to continue. Our little boy had fought this far, we needed to continue this fight together.

From this appointment onwards, we had two more heart scans with the cardiologist until he was happy enough that nothing had changed and then I continued to attend normal growth scans at St Marys on a three week pattern.

For the growth scans, I was alone again. My husband could no longer attend with me. Each of my growth scans showed how well our little boy was doing – I was amazed at every single appointment. He was growing beautifully, much better than the sonographers were expecting. Our little boy was a fighter already!

On the 24th August 2020, I was booked in at St Mary’s for my induction. I was filled with a number of emotions at this point. Knowing I was about to become a mum filled me with excitement, but the reality of how poorly my little boy was going to be once born overshadowed most of the excitement.

Finally, after quite a traumatic labour, on the 27th August 2020 at 21.11 our little boy Alfie was born with the help of an epidural and forceps, weighing a lovely 8lb 3oz.

As he was placed on my chest everything just disappeared for a moment, my little boy was finally here and he looked absolutely perfect. We had a precious few moments holding him before he was taken down to NICU.

Everything felt like a dream. I was then taken to a ward – without my baby – which was something I struggled with. But he was in the bet place and I needed to recover from the epidural.

The next day we were lucky enough to be able to hold Alfie while he was in NICU, something I never thought we would be able to do. I stayed by his bedside until later that day when he was transferred over to Alder Hey. I discharged myself from St Mary’s so that I could be with Alfie and my husband.

Over the next few days at Alder Hey, We were able to hold, dress and feed Alfie – everything felt quite normal. We didn’t think we’d be able to hold Alfie again until after his operation, so we cherished every single moment.

Wednesday 2nd September 8.45am was the day of Alfie’s operation. I think I cried for most of the morning. The thought of my little boy being taken into a huge theatre and his chest being opened for life saving surgery just absolutely broke my heart.

As we took the extremely long walk to theatre with Alfie, I was trying to stay strong, holding tight onto my husband’s hand. We gave our little boy a kiss and were then shown out of the pre-op room as they took our little baby through…

It was the longest day of our lives. All day I was terrified of getting a call with bad news. We were told to expect a call at about 4pm, but this didn’t come until 6pm – we were out of our minds with worry!!

When the call came it was positive – he had done really well and was now in PICU recovering and we could go in to see him. This was difficult for us. Seeing our beautiful little boy looking so swollen, and fast asleep, not reacting to our voices was so so hard!

Usually, parents who have children in PICU are given a room at Ronald MacDonald House. However, because the COVID Cases were rising in Bolton, they weren’t allowing anyone from Bolton a room. This meant we were living out of a suitcase hopping from hotel to hotel, just so we could be near our boy.

Again, with the current pandemic, only one parent was allowed at his bedside in PICU. This was tough. I needed my husband by my side, and he needed me. But sadly, I spent the next 12 days sat by Alfie’s bedside alone. Yes, the support from the PICU staff was amazing, and I knew he was in the best hands, but nothing is better than having your own husband and family around you during such a difficult time.

On the 10th September Alfie was extubated! Finally, some light at the end of the tunnel. As long as he stayed stable, we would be back on the cardiac ward the next day! I felt so happy.

However, when I was leaving for the day, the doctor came to check on Alfie and noticed his breathing had become quite laboured. Alfie was placed on a CPAP machine, to help him breath more easily.

Early the next morning, 11th September, I received the news that, in the early hours, they had to re-intubate Alfie. He had really begun to struggle with his breathing.

I instantly fell into a low mood and the tears returned. I got back to the hospital and just broke down. Alfie was back with the breathing tube and also had two tubes fitted as he’d had a pneumothorax. I just felt like we’d taken a million steps backwards.

He spent about two days with help from the breathing tube before it was removed again – and this time he recovered really well!

The 14th September was the best day of our journey so far… We headed back to the cardiac ward! Hurrah! I was so excited, I could feel us getting closer to home!

My husband was the strongest of us both. I was just so emotional every single day, the tiniest of things would have me breaking down in tears. It broke my heart every day as I walked into PICU and heard that things were steady, but there was no real progress. I felt like we were going to be there forever and we were losing those precious first days with our boy.

I found it all extremely difficult to deal with. Our family being so far away, back in Bolton and Wigan, made things so much harder for us. But we had a Whatsapp group chat, which I updated every day and family would send messages of support to help us get through. Our families have been amazing.

I have really struggled emotionally, but I am so very lucky to have such strong support around me. I think that this is a massively important part of our journey.

Alfie needed to gain some weight and take full feeds before we could even think about going home. He tried a high calorie milk to help him gain the weight needed, but it didn’t agree with him. We went back on the normal formula milk – both orally and through his feeding tube. I’m not going to lie, I hated his feeding tube and just wanted it gone!

Speech and Language took Alfie to have a Fluroscopy (an xray to see where the fluid was going and what Alfie’s swallowing was like). He flew through this with flying colours! No issues and no further intervention needed.

Once we were back, Alfie did a huge sneeze, which resulted in his feeding tube coming out of his nose! I felt massive relief but also worried that it would need to go back in. Luckily, it didn’t. Alfie began to feed extremely well orally, taking the 70mls required, which resulted in his weight climbing up, and pushing us closer to the door home!

On the 23rd September, the day before Alfie turned four weeks old, we were discharged! Again, I had a wave of mixed emotions running through me… Excited he was coming home, but also some fear. I was still so obviously worried about his heart and his wound.

Our family were so happy to finally meet him and there were lots of cuddles all round. I had been waiting for this day for so long and it was finally here. We could now start our new chapter as a family of three, at home!

Alfie is now doing amazingly! He makes us so proud – he’s smashing life! His cardiologist is really happy with his progress and he’s only on three of the four medicines we were given at the hospital. You wouldn’t even know to look at him that he had been through a massive life-saving operation. He has the biggest sweetest smile and is trying so hard to laugh and to sit up! He loves bath time and now weighs a lovely 14lbs!!

We are booked in for a procedure to widen an artery as it has become quite narrow and this needs to be done before his next surgery, The Glenn, which will most likely be in the next month or so.

I am so very grateful for the amazing surgeons, doctors, and nurses who looked after our Alfie, giving us the chance to have our gorgeous boy at home with us.

Update February 2021

After a whirlwind few days thinking we were just in Alder Hey for a small procedure, Alfie required extra support with his breathing in PICU.

This then resulted in him needing his second stage surgery. I’m not going to lie, it was the scariest three days of my life, but he is now recovering in PICU at Alder Hey.

The surgeons are amazing – they saved my sons life for sure on Sunday! I will forever be so so grateful.

Our babies are amazing… My son Alfie has taught me the most valuable thing in life – never, ever give up!

As a heart parent, it’s important to look after your emotional wellbeing. Find out more here.